Friday, 4 November 2016

Slow hand clap to the Food Standards Agency...

You know that popular meme of someone staring at a computer late into the night? Can't go to bed because "someone is wrong on the internet"? Quite appropriate..... except it's not bedtime and I *should* be focussing on the kids' homework, the child who is on the loo (he won't be going anywhere for around 45 minutes though, but then that's non IgE allergies for you...) and the fact that after the week I've had it really *is* Wine O'Clock and this could wait.

Except it can't.      

Myself and many, many others, from Fabed, National Allergy Strategy Group, Adam Fox and his team of paediatric Allergists and Allergy nurses, based at St Thomas's hospital, numerous paediatric gastroenterologists here and abroad plus parents dealing with the reality of life with non IgE food allergies have spent years campaigning to increase awareness and understanding amongst health professionals, teachers and communities that food allergy is not confined to an acute IgE episode. 

I wrote about the desperate need for increased awareness here . You would be *stunned* to know how many parents I know who have encountered health professionals who still simply do not understand how delayed allergic responses work, what FPIES and EGID are, or how cell mediated gut allergic responses cannot be tested for. The numbers of families damaged by poor or indifferent care, or those with little support for children at school, and even those hounded by Social Services because community professionals just don't "get" non Ige allergies. I've attended meetings for the All Party Group on Allergy before, and there are increasing numbers of people appreciating these issues - then the FSA railroads over all recent work in one ridiculous picture.





Yup, they've attempted to differentiate between food allergies and intolerances by reaction time, not even mentioning non IgE allergies. There is so much wrong with this I scarcely know where to start. Their sole defence is that they are trying to "simplify" things. But that's like listing a simplified list of political parties in Britain as Labour and the Conservatives. It's not simple, it's simply WRONG. it helps no one and subtley erodes the hard-won gains made by those of us trying to bring hope for our children.

If my daughter has half a slice of gluten free bread with egg in she becomes unwell several hours later and the response lasts days. If she has the tiniest amount of soya the entire response process which includes soiling and bleeding lasts up to a month. Just where on that chart would she fit? Or her twin brother who has long term bowel damage from non IgE symptoms and narrowly escaped surgical intervention years ago, whose non IgE allergic gut reaction to wheat in particular accumulates over days and weeks.

This isn't a simplified chart, it's an exclusive one, which excludes a significant proportion of those with food allergies. 

We have to contend with the media spouting about the middle class disease that is food allergies, who never stop to think of the opportunity such an editorial presents for education, for explanation and enlightenment. I've contributed myself as a lay person to publications on allergy, which fail to accurately detail non IgE food allergies. Yet still the ignorance persists.

It's not even particularly new information. The National Institute for Clinical Excellence (NICE) has had their own chart since February 2011, which is here. THEIR chart is reproduced below. It's a bit small, but that's because you just cannot over simplify this, at least not in the way the FSA are attempting to.



So what *are* non-IgE Allergies?

Non IgE food allergies DO involve the immune system, but locally, in the gut. It is a cell mediated response rather than a systemic, whole body reaction. It isn't immediately life threatening, but the long term impact ca be significant. t is a local reaction and is rarely possible to test for. Gut allergies are often delayed, which is why food allergies are so traumatic and difficult to manage, requiring strict exclusion diets to determine responses to possible triggers. Imagine an eczema reaction in the gut - it's a localised response to an allergen (or a false allergen which the body responds inappropriately to) and causes a localised problem - no anaphylaxis, no outside response (although IgE responses are often present in addition in those with gut allergies) and is very difficult to diagnose. Wikipedia actually explains this very well here . Like I said, it isn't new, and there is NO excuse for the FSA being so slapdash.

So my advice to them is to get with the programme. Work IN the 21st Century, add a third column and revise your information. Or delete it completely, because quite honestly, you've just shown yourself to be out of date, out of touch and under-informed. Unfortunately though, that picture has probably done more damage than the impact its had on your reputation.  





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